Jolie’s double mastectomy highlights tough decisions on screening

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Angelina Jolie’s announcement on Tuesday, in an eloquent New York Times column, that she had a double mastectomy underscores the difficult decisions women face when they have a frightening family history of breast cancer.

Jolie’s mother died of breast cancer in her 50s after being diagnosed with the disease 10 years earlier. Jolie found out she carried a mutation on the BRCA1 gene that gave her an 87 percent lifetime risk of breast cancer.

She also learned she has a 50 percent chance of getting ovarian cancer, but hasn’t yet decided whether or when to have her ovaries removed.

With advances in genetic screening and cancer prevention research, women who have close family members with breast or ovarian cancer often face a string of maddening questions. Should they get screened for a BRCA mutation? What will they do if they test positive? Get their breasts removed, ovaries removed, or both? Or maybe they should opt for active surveillance with frequent mammograms and magnetic resonance imaging to detect any cancer early, when it is most treatable?

Jolie’s decision to have her breasts removed is one that many women make after being told they carry one of the two known BRCA mutations. “Most medical professionals would say it’s not the only thing a woman can do, but it’s a very reasonable approach,” said Dr. Eric Winer, director of the Breast Oncology Center at the Dana-Farber Cancer Institute.

Removal of the ovaries can prevent ovarian cancer and also reduces breast cancer risk by about half. But it thrusts a woman into early menopause, which can have jarring side effects for someone as young as the 37-year-old Jolie.

“Bone loss, hot flashes, vaginal dryness, sexual dysfunction, and feeling terrible,” said Winer, ticking off the maladies likely to occur when women “jump off the high dive into menopause.” Doctors often recommend hormone replacement therapy for those who choose to have their ovaries taken out before they reach 50, after which they can be weaned gradually from the hormones.

Jolie may have opted to put off having her ovaries removed if she hasn’t closed the door on having more biological children; her doctors may have told her that there’s no pressing rush to have surgery since ovarian cancer typically doesn’t occur until a woman is in her late 40s or 50s, even in those who have the BRCA mutation, according to Winer.

Diagnosed with breast cancer four years ago, Susan Feinberg of West Dennis found out that she was a BRCA1 carrier and opted to have her ovaries removed after having a lumpectomy to remove her tumor and chemotherapy treatments. She’s having a double mastectomy along with reconstruction next week at Beth Israel Deaconess Medical Center.

Feinberg, 54, did not undergo genetic screening until after she was diagnosed with breast cancer four years ago partly because the disease ran on her father’s side, striking her aunts, her cousins, and her cousin’s children; the possibility of inheriting a mutation from him was not foremost in her mind.

“If a woman has family history of ovarian cancer and significant family history of breast cancer --- with multiple family members getting diagnosed at young ages -- she should consider getting tested for a BRCA mutation,” said Winer. “She should look at her father’s side as well as her mother’s side.”

Jolie mentioned the $3,000 cost of the screening as being an “obstacle for many women,” and that may be the case for those who are uninsured. But most women in Massachusetts get coverage for testing if they meet certain criteria established by the American Cancer Society and other medical organizations, including having two first-degree relatives (mother, sisters, daughters) with breast cancer or having two second-degree relatives (grandmother or aunts) with ovarian cancer.

Jewish women of Eastern European descent would likely qualify for coverage if they have a single first-degree relative with breast or ovarian cancer since they are at higher risk of carrying one of the gene mutations.

Testing positive for either mutation means an increased risk for both breast and ovarian cancer; Jolie wrote she was told she had “an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer,” implying that other women with BRCA1 mutations may be given a different set of numerical risks.

But Winer said the science is not there yet to individualize risk based on several mutations. “What you’ve heard from her is the general risk; those are the numbers that we usually quote,” he said.

He also pointed out that 87 percent, while astonishingly high, is a lifetime risk through a woman’s 80s. Given that newer and better prevention techniques might replace surgery over the next 10 years, Winer said, women should also consider their risk of getting breast cancer in the immediate future. Jolie likely has a 20 to 30 percent risk over the next decade, compared to a 10-year risk of about 1 percent and a lifetime risk of 12 percent for the average woman her age with no gene mutations.

But these sorts of nuanced considersations can be overwhelming for BRCA carriers trying to determine whether to get a surgery that’s irreversible. Feinberg sought support in a non-profit group called Facing Our Risk of Cancer Empowered, which counsels those at high risk for hereditary cancers. She now runs the Boston chapter and connects women confronting difficult decisions with those who have already made them.

Women in the group who have been through prophylactic mastectomies often reveal what they’re recuperation was really like. “There are the things that no one tells you, like to put things on lower shelves before your surgery since you won’t be able to reach things on higher ones afterward,” Feinberg said, “or that it will be easier to sleep in a recliner than a bed. I bought myself a recliner.”

Jolie might have downplayed her own healing process by telling women that “days after surgery you can be back to a normal life.”

Still, Feinberg applauds the actress for going public with her personal story. “I’ve been getting messages today from people looking to donate today to our fund-raising caompaign who have been asked before and turned us down. Anything that can help raise awareness and educate people is a good thing.”